Tuesday, October 21, 2014

The Non-EB Child

Before I delve too deep into this, let me make one thing very clear…Ella is not difficult.  In fact, she’s really pretty easy.  She follows directions.  If I tell her not to do something she rarely does it again.  She doesn’t fight with other kids.  She doesn't demand a whole lot.  She’s just really easy as far as typical kid things go.  As far as her bandages, of course it’s not ideal, but they have been a part of our lives as long as we’ve been parents, so even doing her bandages isn’t really an inconvenience.  Other families plan 15 minutes for a bath, we plan 2 hours.  It’s just the way it is…it’s the way it has always been.  When you don’t know any different, it’s not that big of a deal.  And her g-tube is much easier than people think it is.  Instead of eating with her mouth, her food goes directly into her tummy, no big deal.  With all of that said, I don’t want this post to sound like kids with EB are a burden.  I don’t know any EB parent hat would tell you their kid is burden.  It’s simply not true.

We have several friends who have had a typical child after having a child with EB.  The consensus among them all is that, comparatively speaking, a typical child is a piece of cake compared to a child with EB.  I remember shortly after Ella was born, I would be talking to some other moms about typical parenting things.  Many times they would complain about various items of parenting…having diaper explosions, babies only wanting one type of pacifier, no sleep (obviously a big one), the pain of nursing, and the list goes on.  Every time I would sit in silence and think to myself, “So this is what parents of typical kids worry about?”

Before AJ was born, I couldn’t help but wonder how parenting was going to be different.  What is it like to not medicate your child before a bath?  What is it like to just put the kid in a bath without worrying about wounds, bandages, pain, etc?  What is it like to have your kid actually PLAY during a bath and not just sit there and cry?  What is it like to feed a kid and not have to count their calories?  What will it be like to just feed him and not have to use a special bottle to prevent blisters in his mouth?  What will it be like to not stress about diaper brand and just be able to change his diaper without making sure I have a stack of bandages nearby?  What will it be like to be able to leave him in the church nursery and not stay with him the entire time to ensure another baby doesn’t hurt him?  What will it be like to not have to specifically train a babysitter prior to coming over?  It’s weird to think of things like this.  It was always awkward for me to hold a baby that didn’t have EB.  I’m so used to being extra gentle that it’s odd to not think that way.  And a part of me always cringes inside when I see a baby rub his eyes because he’s tired.  Ella slept with soft socks on her hands until she was nearly 2 because we wanted so badly to protect her face.

Ella was nervous too.  She constantly asked questions like, “What if he doesn’t like me because I have boo boos?  Will he think I look weird because I have EB?  Will you teach him not to be wild and rough when we play?”  In fact, before AJ was born Ella had a meeting with a child psychologist who helped her talk about some of her fears about having a “typical” baby brother.

All of that said, parenting a non-EB child is completely different.  Everything he does is different.  Partly because he’s a different child, but partly because we don’t have to be as cautious, so we give AJ a lot more freedom than we did Ella.  He’s much more open to other people because we don’t hesitate to hand him off.  In fact, it is not uncommon for me to pass someone in the hall at church and say to them, “Can I hand you my son?”  He is left in the nursery every Sunday while Joe and I head to bible study and church, every Wednesday while we are in class, and every Thursday while I am at bible study.  I started feeding him babyfood sooner, started testing him out on baby biscuits sooner, and I started trying to let him sit up sooner.  I let him explore more, and I let him get hurt more.  He has fallen off furniture, pulled the baby gate down on his head, and climbed the stairs.  Ella never fell off furniture and never pulled the baby gate on her head mainly because wherever she went someone was always right by her side.

On the other hand, poor AJ doesn’t get nearly as much one on one attention as Ella did.  He has to cry more while he’s waiting for me to finish up with Ella or Sabrina.  He spends more time in his exersaucer or door bouncer so that I can finish cooking dinner or washing dishes.  I don’t read to him nearly as often and we don't practice our shapes and letters as much.  And to make matters worse, as the poor second child, he has to use his sisters pink baby spoons, play with his sisters pink baby toys, and has even worn his sisters pink pajamas.

As for Ella, she has adapted to sisterhood incredibly, and is ok with her brother not having boo boos like she does.  She has even said that she is happy he doesn’t have to have EB too.  AJ loves her so much and she knows that he doesn’t care if she has boo boos.  When he sees her, he smiles from ear to ear.  When she kisses him, he grabs her face.  When she says “Hi,” he giggles and coos.  He has even started saying “LaLa” when she enters the room.”  Yes, the older he gets the more we have to watch his actions around her.  He likes to grab her arms and legs and doesn’t understand that it hurts her.  But we are cautious and when he does grab we simply remove his hand and remind him to be gentle.  A simple gesture that we want him to use on anyone, not just his sister.


Ali Pfautz said...

Thank you for this post! I have often wondered about your day to day lives and how you manage it all. Wow! You just do what you have to do... and do it with love and grace. Beautiful. Ella's so precious and very lucky to have you and Joe for parents.

Anonymous said...

Happy Thanksgiving to you all!

Anonymous said...

Happy New Year to you all - I hope you had good holidays and Happy Birthday to "Oscar" too.!